It was in an ophthalmology waiting room that I first heard about NACD. I struck up a conversation with a mom who was feeding her daughter through a g-tube. My son, Collin, like her little girl, used a feeding tube to eat. He was also cortically blind, had a catastrophic seizure disorder, extremely low muscle tone, and global developmental delays. Though her daughter's diagnosis was different than Collin's, we immediately took comfort in talking to someone else who 'got it,' and when she started explaining NACD to me, I felt my heart rate quicken. A personalized developmental plan?! That I could implement myself?! It seemed too good to be true.

At our first evaluation with Bob, Collin was 11 months old and virtually unresponsive. He did not interact with us at all, look at anything, or do any typical baby things. Within our first 3 months of program, he was looking directly at colored lights and had laughed for the first time in his life. Now, three and a half years later, he has potty-trained himself, stands and even takes steps with assistance, and enjoys many 4-year-old activities in his own way. There have been many hiccups along the road - illnesses, mommy burn-out, unhelpful physicians - but from the beginning, Bob and Sara have been quick to remind me and my husband to relax and remember that we know Collin best. With their guidance, we have become more and more confident in our roles as advocates and have consequently 'fired' doctors, sought second (and third opinions), said "no" to some pieces of equipment and fought for others, and learned when to take breaks and just have fun. We obviously still have a long way to go on this marathon we're running, but as Collin's advocates, we are calling the shots and setting the pace to make it as full and enjoyable an experience as possible.

Click here to read the rest of this article!

Now what?

Trevor (middle)

After a month in ICU and three months in a rehab facility, my son was finally home. Not having another option, my husband, riddled with guilt, went to work; I stayed home to care for Trevor-all alone, young, and inexperienced. I longed for my own mother, who lived a world away in South Africa, to come and take care of me. Trevor was alive, but just that. He could sit up with support and that was all he could do. My healthy, rambunctious baby was no more.

Trevor, at 14-months old, had slipped from his father's arms and hit his head on the tile floor. All that happened next seemed as one indescribable, endless nightmare. Initially Trevor was given a 10% chance of survival; but if by some miracle he managed to pull through, the prognosis was that he would forever be in a vegetative state, wheelchair-bound, blind, silent, and kept alive with machinery. Although my heart was beating, I felt dead. It took five long days, intensifying the damage to Trevor's brain, before the inter-cranial pressure receded enough for a ventriculostomy to be done. The neurosurgeon informed us that this procedure was by no means a "high card" and was at best the last desperate attempt to bring the ICPs down. Once he was stabilized, Trevor was taken off life support and, incredibly, was able to breathe on his own. But he wasn't out of the woods yet. Each time he heard my voice, Trevor's blood pressure and heart rate went through the roof, and he was put in a drug-induced, pentobarbital coma to give his brain rest.

For nine months after the accident we did conventional therapy with Trevor. We taught him to grasp, to swallow, and to sit up without help. But my soul was restless. The doctors and therapists told me not to make our home a therapy place-to let them, the experts, work with my child and hope for the best, but not much. Yet, I wanted to do more...

Click here to read the rest of this article

Here we go again. One would think I would be used to this by now, but I guess I'm not. The current "career consultant" for my daughter, Rebecca, isn't going to work out. Time to go back up the chain of command and re-think this process...again. More red tape, more time wasted, more waiting for other people to decide what's best for my daughter and how they're going to handle a mom that won't settle. Excuse me if I sound exasperated, but maybe some background information will help you to see why I feel this way.

  Becca is 22 years old and is looking for competitive employment. As most people are aware, the current job market in the United States isn't that great, especially if you have Down syndrome or some other label. For the past three years Becca has been working with our state's Vocational Rehabilitation office in conjunction with a couple of different local agencies to try to secure employment. We've spent a lot of time and effort on this. You might wonder, "What has happened as a result of all of those extra meetings, the time spent in job-site assessments, practicing how to answer interview questions, sitting in a library watching the consultant type for her, not much time spent actually applying for anything, and four different career consultants over the past three years?" Well, it's pretty disappointing: several job applications submitted, one phone interview, one call to set up an interview which got cancelled when they found out she had a disability and a two-month stint at Papa John's in a "carved-out" position. Hmmm...kind of makes you wonder if it's really worth all of that time.

Oftentimes, someone that is hired for a job is presumed competent unless they prove themselves not to be. If you have a disability, employers tend to presume you are NOT competent unless you prove that you are...